Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 …

Once again, August 8 is important for those of us with ME, especially for those whose illness is quite severe. I’ve seen Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance in a few places with the words in a different order. I’m not sure what the original was.

I do know that whatever order the words fall into, this is a day to honor and turn the spotlight toward those who of necessity live in the dark, in the quiet, in isolation and desperation.… Read More

OverTheHills wraps up our series of articles on this year’s 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.

Big Ben and the Houses of Parliament, steps from the venue

Friday the 2nd of June was a big day for me, I’d never been to a medical research conference before, and I’d been looking forward to it as a major life event, no matter what the content. As ME patients we are used to being ignored, abused and denied, or at best fed crumbs, but everything about this conference was First Class.… Read More

The highly recommended DVD of the conference, which includes David Tuller’s pre-conference evening dinner presentation as well as all of the presentations at the public conference, is now available for pre-order.… Read More

I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is only the epilogue that was significantly changed between these two versions. ~ Richard7

When I offered to review this memoir I did not quite grasp that it was a memoir. I had focused on the author’s name Julie Rehmeyer, which I recognised, and the subtitle “A science writer’s odyssey into an illness science does not understand,” and assumed that I was offering to review a work of science journalism.… Read More

Writer Never Give Up talks about Julie Rehmeyer’s new book “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand” and shares an interview with Julie …

A riveting new book by science journalist, patient and ME/CFS champion, Julie Rehmeyer, has just hit the stands. “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand” details Julie’s illness and its impact on her life.

Her story is likely to parallel yours, the descent into illness; the search for answers in the sacred science and medicine; coming up empty; feeling abandoned to the ravages of disease; coming to terms with new realities; letting go of paradigms that don’t help; venturing into crazy treatment areas despite the logic challenges, fear and embarrassment; asking for help with mixed results; and working to grow emotionally, psychologically and spiritually.… Read More

International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard …

Can you believe it’s been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence Nightingale’s birthday. This famous English army nurse played a role in the creation of the Red Cross and originated the first school of nursing in the world.

She also had a debilitating, unnamed chronic illness which left her bedridden for the last 50 years of her life.… Read More

This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all …

Phoenix Rising is a community that I will always love. Seven years ago I stumbled upon this place in its early days. I had been isolated and lonely for a number of years because I have ME/CFS, and finding this place and these comrades in disease was life-changing for me.

As is the common story with ME/CFS, I had gone through the personal culture shock of having had a perfectly fine social life, personal life, family life, and the ability to do most normal things with only the normal amount of struggle — and then had it all ripped away from me.… Read More

Never heard of Invisible Illness Awareness Week? You’re not alone. Jody Smith sheds a little light to make it more visible …

From time immemorial, people have been pushed aside and ignored for one reason or another. Nobody likes feeling invisible. That goes for the kid in the playground who doesn’t get chosen for baseball, for the person overlooked by the boss, whose name is left off the group photo.

It’s also true for people who are sick, but don’t look like there’s anything wrong with them.

Lisa Copen founded Rest Ministries in 1996 after being diagnosed with rheumatoid arthritis. She went on to establish Invisible Illness Awareness Week in 2002.… Read More

The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.

Dr. Ian Lipkin

Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.

ME/CFS is an urgent challenge in clinical medicine and public health. There is no diagnostic test or specific treatment for ME/CFS, and in the United States alone there are a minimum of 836,000 afflicted individuals.… Read More

Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.

August 8th, 2016 is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked.

Their footprint leaves next to no mark.

It’s a day that doesn’t get a lot of attention from outside our ranks. But we are determined to change that.

I have lived with symptoms of ME for the last quarter of a century.… Read More

Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS …

Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days.

The editorial highlights some of the most promising biomedical research on ME/CFS, discusses possible broad models to understand the illness, and suggests practical steps to speed up progress.

Our paper is a direct call to the wider biomedical research community to actively target ME/CFS, but we hope that patients will also find the paper useful as a summary of current theories about what causes the illness, and some of the most promising research leads right now.… Read More

Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …

Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”

The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.… Read More

Sasha announces a new resource of appropriate photos for ME/CFS media stories …

We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.

No! Not this beautifully groomed woman with a mildly troublesome sore throat!

But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?​

For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.… Read More

Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request…

On 1 February, ME/CFS patient Clark Ellis wrote an open letter to seven major British ME/CFS charities to ask them to contact QMUL.

He wanted them to write their own open letters to request QMUL to abandon its appeal against the Information Commissioner’s decision that it must release PACE trial data to a patient who had requested it for independent analysis.… Read More

Simon McGrath concludes his blog about the remarkable Prof George Davey Smith’s smart ideas for understanding diseases, which may soon be applied to ME/CFS.

George Davey Smith

Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference laying out ideas for bigger, better, smarter research. Although much of his talk wasn’t focused specifically on ME/CFS in particular, his points are of great interest to the ME/CFS community.

This is because Davey Smith has said he’s keen to play a role in the largest research set of studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.… Read More

Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s Part 1 …

George Davey Smith

Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference that focused on bigger, better, smarter approaches to research.

Since then, Davey Smith has said he’s keen to play a role in the largest set of studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.

The plans are for a ‘big data’ study using a huge cohort that could be 10,000 patients strong.… Read More

The material on this site has been compiled by laypeople and Phoenix Rising does not guarantee the accuracy or completeness of the content. It is intended for information purposes only and not as medical advice. We accept no liability to any person in relation to the content: it is the user’s sole responsibility to evaluate the information and to seek advice from a medical or other professional regarding their own health or personal situation.​